Happy to have found this forum

[Nicole86]

Hello fellow members,

This is my first visit to an IBD forum, and I'm hopeful about finding support among others who share my experience.

I am 27 years old and I've been living in Toronto for 2 years. I have a diagnosis of Crohn's colitis, and I'm currently experiencing a flare of my symptoms for the first time since a fairly serious flare in 2010. Because most medications actually worsened my symptoms, I've been on no maintenance meds, and I feel fortunate to have been well for roughly four years with only brief episodes of mild symptoms. I suspect that right now I'm getting worse because of emotional stresses in my relationship and demands of work.

When I was first diagnosed, I had a major depression, feelings of low self worth and hopelessness about my future. I was 19 years old and thought somehow that having IBD made me flawed, unlovable, and destined to have a horrible life. Fortunately, I have come very far in terms of self esteem and acceptance, but there is still a tendency to feel low and anxious when I get sick.

For several weeks I have been struggling a lot. My mood fluctuates and I have missed days of work. Other times I've shown up late but been too embarrassed to explain that it was related to my symptoms. Even though being alone makes me ruminate and feel terrible, I find myself avoiding friends - literally not answering the phone or texts, and even just cancelling last minute. This fuels a vicious cycle and I feel worse about myself. Does anyone else experience this?

I'm open to ideas and suggestions for day to day coping, and ways to feel worthy and good about oneself. I am on an antidepressant medication that helps a bit, and I have a psychiatrist, so I'm very fortunate. I think a big part of what is missing for me is any kind of connection to other people who suffer as I do. Silly as it sounds, I feel like I'm the only one in the world who struggles this way.

Eventually it would be nice to have a Toronto group that could meet in person from time to time... but that might take some time to organize.

Looking forward to some posts. I want to note that although I might be in need of support and inspiration right now, please do not be discouraged yourself by my story. I've had many years of high functioning and positive romantic relationships. I have a job and a generally high quality of life, but still sometimes fall off the horse.

Nice to meet you.

 

[GI-Jane]

Hi Nicole its nice to cyber meet you too. I'm pretty new to this forum as well, and frankly to my diagnosis (sept). Im sorry to hear your having a hard time with your flare. I know how it is to not want to talk about it at work. I am a nanny and some days I would go with the family for lake day and would pray I could "hold it" for the 45min car ride or have a good day. I'm not going to lie at its worst I embarrassingly enough have had to jump into a few bushes on my way home from work... But that was before I found out I had colitis and a cdiff infection...eek. I'm sure we have all felt really alone at times, I know I have. Looking back on the last year of feeling sick,tired, unsexy, like a huge flake for canceling plans or not able to leave the house for long enough or feel up for it. It's hard to explain to others the symptoms, and the symptoms the meds give you, and going threw ones that make you sicker, or the diets, the cost of the medication or natural remedies/supplements that you have to find yourself because the doctors won't acknowledge non pharmaceutical s despite nothing else working! We have been there and are here to share. I have found pinterest a very helpful resource. You can start by searching "colitis" "Crohn's and colitis" etc I find its easier to search for boards rather than pins. You can follow people with the same thing. I also love it for recipes :gluten free, nightshade free healing diet friendly stuff such as GAPS, the scd diet, paleo etc. I am always on the hunt for a natural resources. I am trying things such as bone broth supplements etc if you are at all interested in the same we should swap resources xoxo gi-jane

 

[David]

Hi there and welcome to the community I'm sorry to hear about your struggles.

I can certainly understand the vicious cycle you're on and many others here can as well. I think you will find a lot of support in that regards.

Out of curiosity, are you on any medications at present or still medication free?

All my best to you.

 

[Nicole86]

Hi GI Jane (love the name). Thanks for your message. I've never used pinterest before, but I'll check it out. For a long time I've actually avoided forums like this, google and diet information because I found that it led to a lot of stress and confusion, particularly when there is such poor evidence for any specific diet or lifestyle changes... beyond the usual eat well, sleep, etc. In fact, joining this forum is a big first step. I'm hoping it will become a trend and that I'll get more comfortable reading about lifestyle changes and others' experiences. I tend to feel skeptical of supplements and things that don't have strong evidence for being helpful (or regulated); but that said, when I'm unwell I take a prenatal vitamin daily - recommended by my GI. I also try to have BioK+ fermented milk ever day - it's like a yogurt drink and it's the only probiotic with evidence for changing bacterial flora in the gut. For me, I find sugar and carbs worsen my symptoms - especially really sugary foods like chocolate, desserts, etc. You mentioned gluten free foods - do you have celiac or do you find a gluten free diet helps with your symptoms?

 

[Nicole86]

Hi David,

thanks for the welcome message. I'm essentially on no medications aside from antidepressants. In past flares I got symptoms under control with prednisone (one time IV prednisolone during a 2 day hospital admission). I was told by my GI that I shouldn't go on prednisone again due to the risk of long term side effects like diabetes, metabolic problems, etc.

I have a prescription for budesonide enemas and I was instructed to take them for a few days when needed. I have found in the past few years that every few months or after a bad viral illness, I seem to get mild flare symptoms that usually resolve (either by natural course or from budesonide enemas, it's hard to tell).

The past few weeks I've used enemas on and off and I think I might be noticing a response. Because I can't take most of the other meds, my doc also suggested I try a combo of cipro/flagyl for two weeks... I think there is some evidence that this can be helpful in Crohn's.

I'd be curious to know if anyone has done well on that combo!

 

[David]

Yes, many people have responded well to cipro/flagyl.

When was the last time you had any testing to determine your current disease state?

 

[jillybkul]

Nicole, This is my fist post here as well. I have been looking though this forum for hours, and I can assure you, YOU ARE NOT ALONE! I totally get where you are coming from, but I don't have any answers. But sometimes, just knowing that you aren't the only one helps, even just a little! If you find the magic answer, please share.

 

[Nicole86]

Hi David,

my last colonoscopy was fall of 2012. I'm not sure when I last had bloodwork but probably around that time.